BK Virus update and Symlin

I'm still fighting this virus.  For the last few months, the levels have been fluctuating between gone and low levels.  Since the goal is to have it be gone, we're not quite done with it yet.  Here are the recent test results.

Date            Serum BK                                     Urine BK                                       Creatinine
5/10/13     Detectable, not quantifiable                 4.1                                             
5/23/13     Detectable, not quantifiable                 3.4                                               1.6

My 1.6 creatinine is the lowest its been in a long time.  That is a very good sign of better kidney health and I'm thrilled to see it.  My potassium was down to 4.1 which is also the lowest its been in a long time.  I no longer have to take kaexolate every week to keep it down.

The next step is to have another kidney biopsy to determine if the virus is still causing active inflammation in my kidneys.  If it is, then I will probably have to stop my immunosuppression altogether.  I'm only taking 1.5mg/day now which is almost nothing.  Since my islets seem to be functioning well, its worth having the biopsy first.  

My recent A1c was disappointingly and surprisingly high.  The previous result was 5.9.  It went from there to 6.9 and then down to 6.5.  I really expected it to be lower than the 5.9.  My BGs were very very good.  

The only clink in the amour seemed to be right after breakfast.  This is the most common time of the day to be the weak point and it always has been for me.  My 2 hour post-prandials were ok, but Senator had been alerting me before that time.  When I would check to verify that he was right, I would commonly find myself in the 200s.  I didn't worry too much about it because I knew that I would be down soon.  The few times I covered for it, I had a low before lunch.  I thought it was just a good training opportunity for Senator.

But, the higher A1c has made me look at this differently.  At my appt with my endo, I mentioned this and we decided to put me on Symlin.  Symlin is supposed to cover those peaks in BGs.  I tried to bargain the starting of symlin for going off my pump, but no such luck. I'm doing both.  Dr. Gundabolu is very conservative with my islets and I can't fault or argue with him for that.

So far, the symlin doesn't seem to be helping much.  I started with the lowest dose.  15mcg/day.  When I was still having the highs, I started adding the insulin back in and I am almost back to where I was.  I'll be calling in my BGs soon and will expect an increase in symlin.


I hope to be spending many a warm sunny day in a kayak.  Here is the first of the season.

Rx: Cross your fingers and knock on wood

The title reflects the recommended treatments by two of my doctors.  I have to say right away, that I absolutely love, trust and respect these two doctors and I thought that it was hilarious that they came up with similar ideas.

Because of this BK viral infection that I've been fighting for several months, my immunosuppression has been dramatically decreased to almost nothing.  A few weeks ago, I noticed that my fasting BGs had been creeping upward into the lower 120s which is high for me.  I've been trying to keep things very consistent so that I would notice quickly if something was going wrong.  I emailed this worry to Dr Bellin who is monitoring my progress.  I was trying not to ask "will you increase my immunosuppression if this continues?".  Her reply was that we should keep our fingers crossed for my islets through this.  She was trying not to say "no more immunosuppression".  We both know that we are more worried about my kidney function at the moment, and the lowered immunosuppression is our best hope.

Then yesterday, I saw my endocrinologist.  We were going over my recent lab results and medications. I said something to the effect of "Aren't we amazed that I'm not rejecting?".  His instant response was a big smile and to knock on the tabletop.  We both laughed and said how lucky I have been and hope that this will continue.  I didn't think about the dual responses of my doctors until I was driving home.  They are both happy and pleased with me and for me that things are going so well.  And for now, both the present and the future seem bright.  On this journey into the unknown, thats a nice place to be.

My recent lab results had some good and bad results.
My BK viral titers keep hovering between detectable and undetectable.

Date            Serum BK                                     Urine BK                                       Creatinine
4/10/13     Detectable, not quantifiable      Detectable, not quantifiable                    1.7                     
4/24/13        Undetectable                                     3.3                                               1.8

My A1c was 6.9 which was a dramatic increase from the last one which was 5.9.  I was shocked by this.  I feel that my BGs have been better, not worse in the last three months. This was repeated at the endo's office and was 6.5 which is a little better.

I am starting on Symlin which is a drug like insulin that might try to keep my morning post-prandials a bit lower.  Its the only place that I can see that I am going too high.  Senator is actually the one that pointed this out to me :)  I'll start at 15mg which is the lowest dose possible.

My C-peptide was 0.39 which is about the same as it was in March (0.37).
My CBC was all normal and included a Hemoglobin of 13.7 which is normal (12-16).
Cholesterol was 182.
Prograf less than 2.0  which was of course very abnormally low



The picture is of Gary and Cruise.  We are also keeping our fingers crossed and knocking on wood for Cruise's future.  He leaves us on Monday to begin his final training as a service dog.  We know he will be a  successful and beloved helping paw to someone special.